Nearly nine years ago I gave birth to a beautiful baby girl named Claire. I had all of the standard prenatal testing that my doctor recommended and had a very easy pregnancy and delivery. So, it was no small surprise when just before we were set to be discharged from the hospital a neonatal nurse told my husband and me that she thought something was wrong with our baby and we would not be able to take her home.
Although it took a couple of years, we finally got a diagnosis of a genetic disorder so rare it has never been written about in any medical journal and we have only been able to identify one other person with the same genetic disorder in the entire world.
Claire’s birth, and the host of developmental and medical issues that accompany her syndrome, thrust us into a world I knew nothing about and never wanted to be a part of. The family and friends who supported and surrounded us were given a glimpse into the world of special needs as well and often struggled about how to help and support us. Often they did not know what to do, what to say, or how to act around us which made for awkward moments. Even almost nine years later some do not know quite how to react to preteen who cannot speak or feed herself, wears diapers, bites and pulls hair, and uses a wheelchair.
If someone you love, know, or even come into contact with casually has a child with special needs there are some things you do to better support your friend.
1. Ask specific questions. I love it when people ask about my kids – all parents do. When people ask how Claire’s siblings are doing it is easy to talk about how the baby is about to roll over or about how my first grader has recently tackled reading chapter books. It’s even easy to talk about how my 4-year-old is going through a streak of being fiercely independent and ask for advice. But with Claire there are always a lot of things going on, some good and some bad, and most of which no one without a child with special needs can relate to easily. Asking specific questions makes it easier for me to know where to start. If you ask about how her physical therapy is going or if she has learned any new signs I’m more likely to answer with more than “fine” since you’ve let me know what you are interested in hearing and given me a starting point.
2. Be inclusive. Although a child with disabilities may be limited in what she can do, there are likely still plenty of things she can enjoy. Claire enjoys playgrounds and movies but not all playgrounds and movies are appropriate for her. Asking us if we would like to meet at a playground that has adaptive equipment or to see a sensory-friendly showing of the latest kids’ movie sends that message that you want to include our entire family on outings. While I certainly don’t expect all activities to be planned around my daughter’s needs putting a little extra thought into how she can be included goes a long way.
3. Be respectful of parents’ needs. As much as I appreciate being asked about Claire and any attempt to include her, I sometimes I need a break. Other times I need to let off steam. There are many times when things are not going well — when she’s not reaching another milestone, when she facing another surgery, or when I am facing another battle with insurance. During these times I may be consumed with her care and just need a break or I may need to talk for a half-hour straight about a current struggle. If I don’t seem to want to talk about Claire, respect that I don’t want to think about special needs for that moment and would rather talk about which show I am currently binge watching instead. Or, if I need to rant for a half-hour about how Claire’s insurance denied coverage for her hearing aid, wheelchair, or ABA therapy just humor me. I’ll feel so much better when I’m done.
4. Offer to help. Life can be overwhelming for everyone at times but these times tend to occur more frequently when a child with special needs and the stress that comes along with her care is thrown into the mix. Offering to tag along to a pediatric therapy session with a Mom or Dad still learning how to navigate the world of special needs, putting a parent in touch with another local family with a child with special needs who may know about great resources, watching other children so a parent can spend a little more time at a doctor’s appointment, bringing over dinner for when a child is sick, or even bringing a Mom some coffee and magazines when her child is in the hospital can be enormously helpful.
5. Treat us normally. Parents of children with special needs often face challenges our friends with typically developing children do not. But, friendship is a two-way street. Just because Claire will never learn how to add doesn’t mean I’m not interested in hearing about your child is a whiz at algebra. Your child’s achievements and struggles are just as important as my child’s and I don’t expect you to support me without also being there for you when you need someone with whom you can share your own parenting frustrations or your child’s accomplishments.
6. You don’t always need to know what to say or do. Many of the struggles I face with Claire are unfathomable to nearly every other parent I meet. When I talk about whether she will develop seizures or about her needing a CAT scan, it’s okay to just listen and tell me that you don’t know what to say. If you aren’t sure how you can help when I seem like I’m at the end of my rope it’s okay to ask. Sometimes I just need someone to listen and sometimes I need a reminder that it’s okay to ask for help when I need it.
7. You can be curious. It’s okay to ask when you have questions. Although not every parent of a child with special needs feels this way I would rather people ask me anything at all on their minds about Claire or our life with her then wonder or make assumptions.
The author is a Washington D.C. based mother of four.
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